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Neurodiverse Mumsnetters

Use this forum to discuss neurodiverse parenting.

1 in 6 autistic people…

21 replies

Ehcpquestion · 20/11/2022 14:28

My 16 year old was recently diagnosed as autistic. As part of the recommendation part of the report was an online course for me to do.

It said in part of the course that 1 in 6 autistic people can’t hold down a full-time job. Do you think this is true? I am so worried for my DD’s future. She’s really struggling (although in a way glad) with the diagnosis and feeling like she’s never going to feel like she can manage in the world (she’s on the verge of dropping out of sixth form)

OP posts:
Ehcpquestion · 20/11/2022 14:29

sorry, that meant to say only 1 in 6 CAN hole down a full time job!

OP posts:
actualnamechange · 20/11/2022 14:37

I would not pay too much attention to that tbh.

I managed to hold down a full time job for years. I'm mid 40s now and can't work at all.

I don't mean to be negative but try not to be too focused on what she will be able to do. The level of supper she will require along with her needs and abilities will be ever changing.

My DS is a high academic currently sailing though uni (lives at home) but would t be able to work at the moment. We don't even know what will happen after he graduates, I'm hopeful he will be ready for a job by then but we just don't know.

My DD has worked full time in a customer facing roles for 3 years now - she left her first job to go for a better paid one as well.

PinkBuffalo · 20/11/2022 15:37

I work full time
it is incredibly difficult and stressful for me but I live by my own and have bills to pay so no option
inhave worked there very long time, public sector job. I am given a huge amount of support at work including social stories, my own office, no phone calls etc etc
i am very lucky that when the worst things happen I been there so long they cannot sack me and I guess most people do like me cos people usually happy to see me (I really love my colleagues)
if I did not have this support I 100% could not work it is the main reason I am currently stuck in a job I find incredibly stressful but moving jobs with good enough pay to live on just could not happen for me I have looked

Tired2tired · 20/11/2022 16:34

The NAS report is only 22% are in any form of employment www.autism.org.uk/what-we-do/news/new-data-on-the-autism-employment-gap
Its a boat that I'm in and most of my old school friends (all autistic) are in, as time creeps on it gets harder and harder as people have less understanding for adults with autism with not much job experience, no one ever picks the person with autism and not much experience over others with lots, it's really an endless wheel of incredibly tough to get experience because of the struggle of job interviews (not even getting into the struggles once in a job) then not having enough experience for jobs because of the above.
As such I really recommend helping her get any job experiences she can, to help her find her niche and get experience. Something like an apprenticeship might also be a good call.
With the rise of wfh jobs, that might be a better chance for her too?
There are charities such as ambitious about autism that help autistic people get work experience, but I find them very very hit and miss and no real support.

I worry that as later diagnoses in adults who have jobs go up, the gov will see it as less of a problem as it will look like the stats are improving but as there's already no support maybe it doesn't matter 🤷‍♀️

Ehcpquestion · 20/11/2022 17:41

Thanks for replying! I am so sorry for my poor DD. She is finding sixth form incredibly difficult and I’m trying to look for less stressful alternatives for her.

I think something she could do from home would be perhaps better, although she feels like getting out is good for her.
It’s all very tricky 😢

OP posts:
Tired2tired · 20/11/2022 17:46

What are her interests/things she's talked about potentially wanting to do as a career? What courses is she doing for 6th form?

Ehcpquestion · 20/11/2022 18:27

@Tired2tired She loves books and wants to open her own bookshop. She started doing 3 A Levels but has dropped to two as she can’t manage all the work. She’s doing English literature, which is actually the only one she wants to do, and law (because college insisted that she has to do two).

We’re considering an ADHD assessment as she struggles so much with starting/finishing tasks and planning her time etc.
I’m torn between saying just quit college all together and then thinking what if she wants to go to Uni and needs A Levels.
I’m not sure how realistic her running a business is, she can’t bear to use the phone and texts me every 5 seconds if sheds too hot/cold/uncomfortable in any way, she daren’t use public transport.
I am trying to apply for an EHCP for her so she can have more time to do A Levels if she wants to.
I’m wondering whether we should be applying for PIP as we’ve been advised to, but it seems a bit fraudy as she only costs us what any teen would cost (other than her private therapist).
It all feels overwhelming 🙈

OP posts:
Tired2tired · 20/11/2022 18:54

Open uni is an option for the future even if she doesn't get a levels.

You should a hundred percent apply to pip (and appeal when they reject it the first time 🙄) she might not cost much now but that money can help her for courses she wants or even save for the future and can pay for the therapist. Applying now with parental support will be much nicer than having to apply as an adult, I am trying to apply and I'm basically giving up and not bothering as its very stressful and complicated.

Ehcpquestion · 20/11/2022 19:42

@Tired2tired Thanks for the support x I’ll look into the PIP thing this week.

OP posts:
BlankTimes · 22/11/2022 10:42

For PIP have a look at the CAB online guide and the Benifits and Work guide. B+W ask you to join for a year around £20 but I found their resources were well worth the money.
The whole PIP system appears to be designed to make you give up, so you need to really persevere with it. If you do the forms as your dc's appointee if they struggle to manage their own affairs, sometimes it can be an easier process. I had a very challenging time with it until Tribunal but other parents have almost sailed through the process. See the threads on SNchildren and SNchat.

kingsleysbootlicker · 22/11/2022 13:54

Bear in mind that the statistics are most likely based on those diagnosed... there will be a lot of adults (especially females) who are undiagnosed and working

Schlaar · 22/11/2022 20:17

In my experience it’s not that autistic people struggle to hold down a job… it’s that they can’t get a job to hold down. Employers don’t necessarily hire the best qualified applicant - they also consider whether they want to spend lunch breaks with that person for the next 5 years. You can have amazing qualifications but if you’re awkward and not chatty or smiley nobody will hire you. Employers will hire the applicant who seems tolerable and fits in well, not the autistic person who makes them feel uncomfortable, even if the latter is better qualified and more capable.

I speak as a very highly qualified autistic person who has been repeatedly turned down for jobs based on personality. Feedback is always that I have excellent skills but they don’t like me as a person and I need to fix my autistic traits or nobody will ever hire me.

knackeredcat · 23/11/2022 10:00

You've hit the nail on the head, @Schlaar , and even now things aren't improving much on that front even with declarations and formal diagnosis 😟

AshGirl · 24/11/2022 07:06

Schlaar · 22/11/2022 20:17

In my experience it’s not that autistic people struggle to hold down a job… it’s that they can’t get a job to hold down. Employers don’t necessarily hire the best qualified applicant - they also consider whether they want to spend lunch breaks with that person for the next 5 years. You can have amazing qualifications but if you’re awkward and not chatty or smiley nobody will hire you. Employers will hire the applicant who seems tolerable and fits in well, not the autistic person who makes them feel uncomfortable, even if the latter is better qualified and more capable.

I speak as a very highly qualified autistic person who has been repeatedly turned down for jobs based on personality. Feedback is always that I have excellent skills but they don’t like me as a person and I need to fix my autistic traits or nobody will ever hire me.

YES! So much talk about 'fit' when recruiting Sad

I thought for years that I needed to 'be myself' in interviews and then finally realised that this was NTBS (neurotypical bullshit!) and actually I needed to mask more to get a job.

(Having said that, I am also a high qualified professional and recently started a new job which I really enjoy. Don't despair OP, your DD will find her niche!)

Accesscode · 28/11/2022 10:42

Those statistics are based on diagnosed individuals. It may just be that many who are autistic and are able to work are just not diagnosed. It's about finding your niche and a supportive work place, which can be incredibly hard, but it helps if you know that that is what you are looking for.

I work in stem, and the majority of my colleagues are likely neurodiverse in one flavour or another. there are pockets out there where we can fit in.

TigerRag · 28/11/2022 12:31

You have to remember those stats will include the ones who can't talk, have no sense of danger, etc. As wel as those of us with other disabilities.

I used to belong to an adult support group where 85% were in employment.

ManageableLifeLady · 02/12/2022 20:35

I think it depends on the job. I held down part time work really well when I was young, the down time allowed me to gather my spoons if you will. I absolutely tanked with every single full- time job and the worst ones were the people heavy ones that needed loads of full-on interaction, I just soldiered on with less and less capacity until inevitable energy failure and collapse.
Now I work self-employed doing skilled work with very little human face time and I am able to manage my own energy. This works much better for me.
This is not the same for everyone but I find hands on quiet skilled work in my own space suits my aspergers and is a lot more manageable than me trying to fulfill a set quota of face heavy hours in an alien environment full of noise and lights and random conversations and interactions.

Not the same for everyone, but I wish someone had steered me down this road when I was younger. It has been a slog to get here late.

Willowcat77 · 05/12/2022 18:48

@ManageableLifeLady Do you mind me asking what kind of work you do? I'm trying to help my Autistic daughter find her career path. She's just dropped out of university because she couldn't cope with the pressure 😕

xyhere · 06/12/2022 02:43

kingsleysbootlicker · 22/11/2022 13:54

Bear in mind that the statistics are most likely based on those diagnosed... there will be a lot of adults (especially females) who are undiagnosed and working

This is the key point. Take me, for example - I learned to mask very early on, effectively taught by my mother, who's also autistic...as were her mother and her grandmother. The result of that family history is that it became a family "tradition" to teach the next generation how to hide themselves in plain sight. Yes, there's a lot of wilful denial that goes with that...especially since I was born in the late 70s, so for all of my childhood a diagnosis of autism went hand-in-hand with "go directly to the dreaded Special School and never have a normal life".

Anyway, I've been diagnosed at the age of 45, although I was strongly aware that I'm autistic for three years before that. I'm basically almost the stereotype - incredibly good at STEM subjects, an instinctive affinity with systems of any kind, and...I turned one of my special interests (computers) into a career that, while it hasn't always been incredibly lucrative for me, it very much is now. I have a wife, a daughter who's 28 (not biologically mine, but I don't really see a functional difference and neither does she), and a very happy life.

It can be done, depending on the exact presentation of course. I got here by carefully and painstakingly working with my difficulties, and constructing an environment around myself which minimised my apparent alien-ness and allowed me to play to my strengths.

It hasn't always gone well, of course. My wife and I had at least a decade of finding life together very difficult (not helped by external circumstances), and a diagnosis earlier (not to mention being part of a very helpful autistic community) would definitely have accelerated our progress towards the relatively stress-free life we enjoy now.

When it comes to interviews...for the last few years (since I began to identify as autistic) I've always told them up-front that I'm autistic. I explain what I may have difficulty with (eg I may take a few moments to formulate an answer to a question, but that's usually because I've already jumped to the answer and I'm just figuring out the best way to phrase it for my audience), and I'll always ask them not to take it personally if I avoid eye contact for more than a couple of seconds. I'll usually make a bit of a joke about it if I can, to relieve the tension; I've found that NTs tend to be taken aback when somebody's quite that open about something that's often been a taboo subject. I also encourage them to ask any questions they want about my autistic tendencies, even if they're not considering giving me the job.

Before that, I had all sorts of tricks I'd pull to hide it. For example, eye contact - I'd surreptitiously nudge my chair further away while taking my coat off to hang it on the back, hiding the deliberate action behind apparent clumsiness. That allowed me to fake eye contact by staring at the interviewer's nose instead, and being far enough away that they wouldn't notice.

I suppose the point of this semi-brain-dump (sorry) is...don't worry too much about the future. It's not a fait accompli that she's going to fail to integrate with the world, and every new special interest is another potential opportunity to find a career that she'll be able to embrace. The most important thing to my mind is giving her the tools that she needs to build a safe, comfortable and above all not-limiting environment around herself as she enters adulthood, and helping her be aware of her limitations without letting them be her focus.

ManageableLifeLadee · 08/12/2022 21:43

I am a horticulturist and I coppice woodland. I make hazel hurdles and grow apple trees and I am a wood burning artist as well. In short my life revolves around land based skills and traditional crafts. Not people, I like people but too much people is bad for me. If your daughter has very few spoons for people interaction then a good route is a hands on artisan skill or craft or trade. I have aspergers friends who are happy carpenters, builders, roofers, gardeners, artists woodland managers, ecologists and iron mongers.
Our brains and skill set is great in a limited human face time arena where our focus is unbroken and our tendency towards special interest perfection can shine.

Willowcat77 · 09/12/2022 15:04

@ManageableLifeLady Thank you! That's really interesting. By a strange coincidence my daughter has been looking at Forestry courses! She is also wondering whether she could become a Lab Technician, because the degree she dropped out of was Biology, which she loves but just couldn't keep up with the huge pressure of academia.

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